My Sugar Cage

Sunday, August 19, 2012

It's been about five months since my last post. I know there are a few people who follow this blog, and I am sorry. There have been a lot of changes in my life, and I should have been posting about them. It wasn't until I read a friend's blog the other day that the urge to write returned.

More and more I've been thinking of sharing this blog with my family and friends. Many of them don't know about my struggle, they've never heard about diabulimia. If they've heard about it, they don't think I have it. There is a definite fear of letting them know. This monster that is still present in my life seems too venerable to put out in the open. Because even though it is a monster, it is mine. Even though I'd love for it to be gone forever, the thought of not having her is frightening.

For months, I have tamed her. My health is better because of it. However, knowing she is still lurking underneath everything remains a comfort. It's like those people who have tigers or bears for pets. They tame them, swear they are gentle, and yet one day the tiger or bear starts acting like an animal. Usually the ending to the story isn't positive. Part of me knows that I should know better. That my monster may be dormant now, but that doesn't mean she'll never act on her wild instincts. I would be better to let go of her, release her. The other part of me feels like I can't. She is mine, and I cling to her.

Will I ever be "cured"? I don't rightfully know. It's a common belief that eating disorders never truly go away, just like Type 1 Diabetes. I used to think if diabetes was cured than maybe the diabulimia would go away too, but now I just wonder if my monster will manifest itself as another eating disorder. I'm still striving to find the perfect balance between binging and limiting food, because I seem to always be doing one or the other. Yet, at the same time I'm healthy right now. It's conflicting, and I feel crazy.

As a diabulimic I don't feel like I fit in anywhere. "Healthy" diabetics can't wrap their heads around someone not taking insulin. People with "standard" eating disorders like anerexia and bulimia don't seem to understand that our feelings are the same, but the method different. "Normal" people (those without diabetes or an eating disorder) seem to have a hard enough time understanding diabetes, let alone an almost unspoken of eating disorder that goes along with it. I feel alone with this, and scared for the others out there. I know so many of you feel alone too, and to say "we are not alone" seems foolish. My struggle is only known by a few. I hope we will all find each other, so we don't have to be alone anymore.

Saturday, March 3, 2012

Life's been tough lately. I just thought I'd put that out there in case no one got that from my last blog. However, in its "toughness" I think that I lost sight of my goals. Not only what I wanted for my treatment, but what I wanted for my life.

Yesterday, I didn't want to leave the house because I thought I looked too fat. I haven't done that in a really long time. While I was hanging out with friends they kept asking me why I looked so mad. I told them I wasn't. How are you supposed to tell people "I think I look too fat to be outside"?

Earlier, I read a letter I had written about a year ago. The words I read seemed to come from a someone other than the woman writing this blog right now. That letter was understanding. It didn't self-criticize and give an excuse. Instead, it asked for forgiveness and patience.

Forgiveness and patience. Two things I have been denying myself for several months. For months I have been beating myself over every perceived mistake. Nothing has felt like enough, even if I was told that I had done a good job. I have spent months trapped by these thoughts. It has made my life harder and unhappier. I have created situations in my head and let them effect my reality.

This is not who I wanted to be. This is not the person I am working towards. I slipped back into a mindset without even knowing it. I lost sight of myself for one minute and the disgusting "monster" that is everything my diabulimia is took over.

I'm sitting here feeling sad. I wish I could think of a better word but I can't. I am sad that I have been hating myself for so long. I am sad that I believed I was unworthy of love and happiness. I am sad because these thoughts consumed me... but in that sadness there is freedom. Freedom because I know that I don't have to be that sadness any longer.

I am going to choose to let this sadness go. I am going to choose to allow myself to love whole heartedly and receive love whole heartedly. I am going to choose to let the person I am be the person in the mirror. I will choose to defy all weight on any scale. I will choose happiness.

Monday, February 27, 2012

Maybe I don't say that out loud enough. Perhaps I don't give myself enough credit for trying to free myself from my self-created cage. I notice it in flashes. Parts of the day in which I'm still trapped. When I think I'm "okay" I wonder if I really am. It's hard not knowing that. When am I okay? When does this torture that I feel stop?

I don't have an answer really. The binges have gone away. I'm taking my insulin, but I feel weak. I feel like the thin piece I keep grasping, the piece that fights back every other thought and instinct, is about to crumble under the pressure. If it does, I don't know what will happen. When things go wrong I feel like everything starts to spiral out of control. It's so hard for me to "go with the flow." I just feel like that's impossible for me right now.

I lost my job. My last day was on my birthday. I knew it was coming, and I tried to find another but I failed. I failed at that. I made money for my family, I could provide them with groceries, gas, and whatever else was needed. Now I cannot. This makes me useless. For the past three days I have felt like crawling into bed and never getting out. I feel on edge about absolutely everything. I keep trying to say it in a way that makes someone understand, but I'm pretty sure no one wants to hear it.

Thursday, December 15, 2011

It was the Christmas season of 1998.My father was underway and would not be joining us for Christmas that year, so my mother decided that we would go stay with my Grandparents.To this day, having Christmas in Wisconsin feels special.There’s something about the snow that seems magical.The way it transforms the land into another world.That fantasy built up by storybooks somehow seems complete when waking up to a snow-covered wonderland.

Plus, I got to see my grandparents.

My grandmother had already told me about the gingerbread houses she was planning on having my brother and I build.I was pretty stoked.I loved any activity that allowed me to express my creativity through frosting.I was looking forward to this trip.I hadn’t been feeling myself lately and could use a little light-hearted holiday festivities in my life.

I was unaware that this trip would change my life forever.

I don’t know why I was so excited about the gingerbread house, but I couldn’t wait to get started.My grandmother said we had to wait til a specific day (I can’t remember why.)In the meantime my mother’s intuition that something was wrong with her daughter kept growing.So they made me pee on a stick.

The result was black and I had no idea what that meant.No one really bothered to explain but we were in the car and on our way to the ER.

I remember needles, screaming, and images of Snow White.The clearest picture is my mother’s face filled with tears.None of this makes sense.My Aunt Katie is reading Repunzel to me. My father is leaving his ship and flying to Wisconsin.Eventually someone tells me that I have diabetes, whatever that means.

All of a sudden my life changes.

Someone starts explaining that my body doesn’t work right anymore and my parents will have to give me shots.I tell the nurses that I will do them myself.I still believe that once I leave the hospital I will be okay and this nightmare of shots (self-administered or not) will be over.I know Christmas is coming up and I need to get to Grandma’s and make gingerbread houses.

Diets.Carbohydrates, proteins, and starches.All words a child should not know, and yet I am now expected to swear by.I miss our family Christmas party.Christmas is coming.I have to make those gingerbread houses.

I leave the hospital.Words like “no-cure” and “rest of your life” have no meaning yet.One day they will and they will hurt.Right now, I don’t care.I just want to make gingerbread houses.

My parents and grandparents were scared.Now that I’m a parent, I can understand how frightening the experience must have been for them.Their brave face fooled me at the time.I’m sure it felt like a drop of unaccounted for sugar would kill me.Sweets were not on the diet.Gingerbread houses were not okay anymore.

It’s strange how writing this 13 years later still brings about the feeling of devastation I felt when I was told, “No gingerbread houses.”That meant something to me.That was when I knew something had changed.In that moment if felt like Christmas had somehow been taken from me.

I’ve often asked myself why gingerbread is the most significant thing to stand out when I think of my diagnosis.All the other images are just secondary.Despite everything that was introduced into my life, it’s the gingerbread that remains a constant reminder of the day I was forced to grow up a little faster than I should have.

Thursday, December 1, 2011

I am so sick of hearing about "low-carb, low-carb, low-carb." I've heard other diabulimics say it has cured them, I have heard of low-carb diets as advice from people who mean well, and I read a lot about it in the diabetic community in general.

I am not a fan of low-carb diets and neither is the American Diabetic Association. In fact, the ADA advises against low-carb diets for diabetics under any circumstances. For diabetics, low or no carb diets run a high risk of severe hypoglycemia (low blood sugar.) The American Heart Association recommends at least 100 grams of carbs a day.

Denying your body of the minerals and energy it needs isn't any better than denying your body of the insulin it needs.

I think the draw to this diet for people who have diabulimia is that technically, you can eat as much as you want, lose weight, and not have to make yourself sick. In that way, it sounds like a low-carb diet could actually "cure" diabulimia. Let me be very clear about something.

Diabulimia is an eating disorder.

One more time.

Diabulimia is an eating disorder.

Yup. It's right up there with anorexia and bulimia. It means that diabulimia is not just about not taking insulin.

You cannot cure an eating disorder with diet change. Recovery comes from true self acceptance and love of yourself, regardless of weight or any other imperfections.

If you want to begin your recovery process please seek out a team that consists of a nutritionist, therapist, and a diabetes health care professional.

Friday, November 25, 2011

I kick off the holidays with my best friend coming to visit me from Idaho. It's the one week of the year that I get to see her and it's pretty rad. Let's just say what we have a good time.

What gets difficult is the food. There's so much of it, and I often find that it's a trigger to not take my insulin. Here's the scary part.

I've moved beyond consciously skipping insulin.

I know that I sound like a freaking nut job, but it's the truth. My brain jumps to a place that makes me forget. It's a self sabotaging thing. I'm trying more and more to overcome this. When I do, I feel like I'm constantly fighting this thought about gaining weight.

Then there's Facebook. I logged on and my feed was overwhelmed by status messages that all said things about eating too much, gaining weight, dieting, and hitting the gym. What pushed me over the edge was the following comment

"I ate a lot. It's bad news when the fat pants aren't fat anymore :("

The author of this comment? My mother.

Mom- if you ever happen to read this blog I apologize for what I'm writing. I love you and I know that my journey has been frustrating and scary for you as well. I am not trying to slap you in the face with this, but I have to say this somewhere. Maybe if you do read this, you will understand me more. I'm not sorry that I'm writing this but I am sorry if it hurts you.

She received supportive messages that all contained woman beating themselves up about eating one meal. I would like to point out it's the one day a year that she's not dieting. ONE DAY.

I truly believe that my mother suffers from eating disordered thinking. I grew up with overweight parents my whole life. Their inability to accept themselves effected their attitudes towards the foods that I ate immensely. I wasn't allowed to eat unless they were hungry. They told me that because I was smaller than them, that there was no way I could be hungry if they weren't. I snuck food a lot and felt embarrassed whenever I was hungry.

Then my parents got divorced and my mother refused to get out of bed. She barely ate and when she did it was in adherence to a strict Atkins diet. In a matter of months she lost 70lbs. Losing that weight along with the divorce changed her.

To this day she's always telling me to eat less carbs and I'll be okay. I try to explain to her that low carb dieting is not going to cure my diabulimia. I will still deal with the fact that I have an eating disorder.

She doesn't think I have an eating disorder. In her mind, I don't take care of myself on purpose. I suffer from some sort of victim mentality that I will be able to overcome if I just accept the fact that I have a disease that I need to take care of. She's told me before that I can literally change overnight if I just turn the switch on that says "hey I can take care of my diabetes."

I've tried to explain what it's like. I've tried to speak up so many times. She can't comprehend triggers or the feeling of a piece of pizza. What she doesn't know is that she lives this too, it's just manifested differently.

I am trying very hard to overcome disordered thinking. Most importantly, I am trying to accept my body for what it is. It feels hard to do that when I can't get my own mother to understand.

Saturday, November 12, 2011

Earlier this week I witnessed the most terrifying event I think I've ever seen. I was walking around San Francisco, and out of the blue I saw two twenty-something year old men beating a man who appeared to be homeless. They maced him, threatened to stab him with the screw driver they were holding, and began to stomp on his head. People were standing a safe distance away and just staring as this man was being attacked. 9-1-1 was called, but when would the police or an ambulance get here? My heart started pounding in my chest. I knew that if someone didn't intervene this man could die. The woman standing next to me locked eyes with mine and in that moment we both knew what was about to happen.

I don't know what exactly came over me but for the next 5 minutes I became someone different.

This woman and I charged forward, like two warriors leading an army. We were screaming, were they words? I can't remember. I just kept thinking that this man cannot die while a crowd of people just watches.

Our screaming worked. The men took off.

The victim laid on the ground not moving or saying a word at first. My heart stopped. Had we been too late? He started to stir. We propped him up. I have never seen a face so badly broken before. I've seen movies and pictures of violence but this was nothing like it. The blood, the pain, the bruising it was just astonishing in the worst of ways. It was not make up, it was real. Another human being did this with his hands and feet while others stood by and watched. I don't know what prompted this violence, but I'm sure it didn't justify what was done.

This experience made me think about a lot of things. First of all, I have an uncle who has been chronically homeless since the 90s. He is homeless due to alcoholism, and I know he has his days where people clutch their purses tightly, walk by quickly, with their eyes averted. We've all done it. However, if he were being attacked I hope that those averted eyes would not ignore him.

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About Me

Diabulima is an eating disorder that effects T1 diabetics. This occurs when a diabetic omits their insulin for the purpose of losing weight. I have been battling this debilitating condition for over 8 years and am now starting to seek proper treatment. I hope to document my treatment process as honestly and accurately as possible because there is not a lot of information available about this disease. I invite you to read and comment on posts with any questions and I will try to answer them.